Brave and Sad

Moving on from yesterday.

Thank you Kaitlin for the kind comment left on the blog about how you can be sad and brave and strong.  It reminded me of this, which was going around Facebook just last week.  I love Little Critter, but I appreciate the point it's making about accepting emotions.  I'm not really upset to have cried in front of my children.  They've seen me tear up before, I can be a bit of a puddler and even cry when I'm happy.  But I think there is a line where you have to be careful not wanting to look like you're falling apart because that will be scarier for them. I felt I was able to go to that zone when our cat Willow died last year, and I was strong so that I could guide Cordelia for her first close experience with death.  So I guess that was the hardest part---that I'm scared of how scary this is for them.  

I also heard from a few more of you.  Thanks for sending the love, hugs, and support our way! Thanks for going on this blog-journey with me, highs and lows.   

I think we've decided that moving forward Jason is going to do shots and I'm going to hold Phoebe.  While we get used to this.  I still want to participate in the shots, but she kind of want to be held by me anyway, so maybe it will be slightly more comforting.

* * * * * *

I made an abbreviated post on Facebook about my struggles last night and got quite a response.  Here were some suggestions/responses.  It's a bit long, but I think I'll just share it all.  

"This is hard stuff! Try to give yourself some grace. My paramedic husband can handle horrific accidents and save lives but he has a hard time sticking our daughter. She’s 11 now and we still cry about it. Hang in there! You’re not alone."

"This sounds so much like my first time giving my son an injection at home. It had gone so well at the hospital when I was learning so I felt okay going into it. It was HORRIBLE. His little leg looked like a pin cushion and I poked myself too as he wasthrashing. It was one of my most horrible days as a mother and I still feel sick when I think about it. BUT, he forgave me and I forgave me and I had to remind myself: I’m not a nurse. I didn’t go to school to give shots. They make it look so easy but they’ve done it hundreds of times. I had to learn on my OWN BABY. Since then, it has gotten so much better. I stop before I stick and take two deep breaths, then in like a dart. I’ve learned a little bit each week and have committed to making myself the best dang shot giver because his body needs it. Hang in there!  PS- I still cry sometimes."

"My best advice is don't hide it from her. She may be only 19 months but she understands. Involve her in every step as much as possible. Let her get the needle or alcohol prep, clean the site, get the vial out, ect. Give her a task and stress it's importance. We started all this with my LO when she was 18 months and we tried to involve her in everything and explain everything as we are doing it. From the beginning she never batted an eye at any of it and it has never been a battle to get blood drawn, give medicine, sit for exams, or anything. She is now 4 and the lab people comment that she does better at her draws then their adults. It is hard mama, but you will get more confident at it."

"We're years in to shots for both of my girls. I'm still a mess afterwards. Every time. When they were only doing mtx injections I would wait till they were in a deep sleep and inject. It stopped working when they started humira, but they never woke once for mtx. Maybe you could give that a try? Getting the needle in can also be a bit easier if you make sure they are SUPER hydrated. Most importantly, remember that she will forgive you. You're brand new at this, and it will get easier. Hugs mama"

"The first or second time I s it, I dragged the Humira needle across my toddler’s skin. Yeah, super mom. I know. It gets easier. Our guy is four, will be 5 this summer. We started when he was just after 3. We do biweekly Humira & weekly MTX when we’re healthy. Even though it’ll be two years since we started in August, it still takes two people. One to hold and one to inject. I’m the injector. I’m the holder at the Dr’s office for blood draws and vaccines- but not at home. My hubby had to learn to hold. Because he’d never done that duty before. I have my MIL and my Mom who are both RNs that can help when my husband isn’t around. I know some people that do the pokes at a doctors’ office.  You gain your footing. When you see how it helps, it helps too. Mama, you got this. You have to go into it with confidence."

"I have not started my son's shots yet. But I have done shots on animals for 4H and our horses. If the needle is left over after the shot (I assume so), practice on an orange. It is amazingly very similar to people. Then when you try it again you will be more comfortable. And I am sorry a baby so small has JIA. Hugs to you."

"I once stuck the needle in and went to push in the meds, but ended up pulling out the needle instead, so i had to stick her again. 😞 We are not certified nurses. We will make mistakes but we will keep on nursing our kiddos as needed, because we love them."

"We started shots when my daughter was 2.5. We’ve been doing shots for almost a year now, and while occasionally we have a time where she doesn’t do well for the most part she doesn’t mind the shot much at all. We were doing the back and forth for a long time so neither of us would be the bad guy too, but the truth is that my husband was just not good at giving the shots, which added stress for all of us including my daughter. We ultimately decided to have him mix and prep her shots, and I give them to her. My daughter gets to choose a tv show to watch, which helps to distract her. She also likes to participate in the prep like wiping off her arm with the alcohol pad and will occasionally even want to push the medicine in. For my daughter, giving her as much control of the process as we can allow makes it more manageable for her. I know that it is SO hard right now, but I promise that it gets easier. ❤️"

"Hugs to you ❤️. I know exactly how you feel. My husband had to do both of our kids injections because I just couldn’t do it. I tried to once and both kids said that I hurt them more then it should have. Our little girl has failed on injections and now has moved to infusions, but our son still gets his meds through injection. My role for him is to hold his hand ❤️""

"I practiced on an orange and just couldn’t do it for our own daughter. My husband has always been the one to give injections- both Enbrel and methotrexate. I would have my daughter on my lap, with a stuffed animal or blanket and then my phone for a game/noise/distraction. We’d talk about that the medicine helps her to feel better, to make sure both our kids heard about it and that we’re a team helping each other, so that she didn’t think daddy was the “bad guy” doing the injection. Now she’s 7 and she grabs my phone and plops down without me and my husband does it. 
At the ja conference we heard advice about paying attention to the child not getting a shot. As hard as it is to do when you’re so occupied getting the shot into one, pay attention to the reaction of your other child. If possible, make sure you talk through what’s happening and why to both kids. We were so worried about one kid, we didn’t realize the other would huddle in the corner every time we did sisters shot."

"feels very familiar. All the emotions are things I’ve experienced too. I’m sorry anyone has to deal with this" 😞"

"nclude her in the preparation let her hold the band aid and the guaze let her blow the area you wiped with alcohol wipe ..sing a song she loves do anything you can think of to include her of helping.. my daughter is 22mos she's been doing great every since we started this. Good luck mom"

"I had similar Saturday night. I think I bent the tip of needle during draw. Took two pokes and second went in tough. "

"This made me cry, hugs to you. I know how hard it is. Hang in there! ❤

Manag

"I have never done the shot lovely, husband does it every time and it’s been almost a year now. I hold her down with all my strength and he does it and she’s used to that, she sees me more of the bad guy restraining her to be honest! Some people recommend trying it while they sleep as they just flinch and go back to sleep....might be worth a go? Xx"

"We just got our diagnosis a month ago. I take her in every Monday because I can't stand to give my 14 month old an injection. I have no problem drawing it up but can't get myself to go the next step even though it would save me a ton of time."

* * * * * *

Wow. Thanks Internet Support Group!!  If your child is ever facing some sort of Diagnosis, Internet Moms (and Dads) are there for you!  Get connected to your tribe.  

I think the most useful suggestions were to practice on an orange and involve Phoebe more in the process.  I do not really like the idea of injecting her in her sleep.  I think she would wake up, and even if she didn't, it still seems like some sort of gray-area of consent in the future.   It may work for some people, but I don't think it's for me.  But letting her help wash her leg with the alcohol wipe and hold the band aid sounds much more up my parenting-style alley.  :)  I can at least try it, though I'm pretty sure she will still cry!!

But maybe things will get better.  Phoebe was having a pretty amazing day.  I kid you not, she was taking her eye drops WITHOUT FIGHTING OR CRYING today.  HERO BABY!!!

We did go to see Dr. B this afternoon.  Another thing I have great appreciation for is her availability and willingness to see me.  One thing in the Facebook group that I was seeing was people struggling to get appointments.  Like in Arkansas, there are only 2 pediatric rheumatologists in the whole state and people were suggesting driving to another state.  I told Dr. B how much grateful I was that she offered to examine Phoebe's hand herself.  She told me that there are 9 states that have NO pediatric rheumatologists at all.  She also apologized for being late, she was running behind.  But I had no complaints as I know she totally squeezed us in and is a very, very busy doctor.

To be honest, I kind of expect this to be a more in and out check in, like when you go to the pediatrician, but Dr. B was very thorough and went over examining all of Phoebe and wanting to know all the details about how she is doing on the meds and with PT/OT starting.  She bent and twisted Phoebe's limbs to see if the injections she had done were working, and seemed pleased!  

Phoebe's cyst on her hand is from synovial fluid.  She couldn't really say if massaging her hand had maybe displaced some fluid, but it seemed a little unlikely.  She also noted that the cyst is very near her wrist, so she could have some arthritis building up in her wrist, or in her hands around the tendons there are also lots of little bones.  Hard to say.  But, she agreed with the On Call doctor--- leave it alone.  This isn't something to soak or ice or drain away, we have to control the inflammation.

In her email, she said she would maybe consider doing a course of oral steroids for Phoebe, which was worrisome since she had previously been telling me not to do too much steroids.  But after seeing her and that she still had use of her hand (although she does not want it touched!), she didn't want to do more steroids.  Phew!  If she needed them, we would do it, but it is a relief to not have to add one more med.

We go back in two more weeks and then Phoebe will also have lab work done.  We'll then try and stick through til May and if Phoebe is not improving on mtx by then, we may move on to a biologic sooner rather than later.  In the mean time, I really hope she does not get any more cysts!!  

Not For The Weak

You know, I went back and forth about sharing this blog, because feeling that you have an "audience"  (however small) stays in the back of your mind when you're writing.  Sometimes, I want more people to read it, so they can be up to date on what we're going through.  But other times, I don't want you to be reading this because I don't have anything good to report, and it will make you sad.  I'm torn between needing to pour my heart out, but scared to let anyone else know that my heart is broken.

So if you're looking for something happier to read, maybe come back in two years when we'll be further along in this process, or at least have gotten better at some of these things which currently feel impossibly hard.

Tonight I tried and failed to give Phoebe her shot and it was terrible for everyone, though fortunately Jason held it together while I did not.  

Based on what I've read, I've been talking to Phoebe (and Cordelia) about how we are going to do the shot just very briefly, over the last few days.  I don't know... just hoping to "normalize" it in a "yup, we have to do a shot and it's a little poke, but then it's all done and the good medicine is going to help fight the arthritis."  And that after the shot we'd do another ice cream party for everyone.  I've been telling Phoebe how brave she is and that she is an arthritis warrior and we do little family cheers for her.  I was feeling pretty good about it.  We've been playing with the buzzy bee.  Cordelia even picked some new bandaids for Phoebe--they have princesses on them.  

Anyway, we prepped the shot, but Phoebe still knew what was going on faster than I'd like because she saw Jason had gloves on.  (I wore gloves while cleaning in the kitchen earlier in the week, and she definitely got nervous, seeing them.  This girl is so smart.)  Even with everything prepped ahead of time (alcohol pad, gauze, band aid already opened), we are still not fast, like a nurse would be.  

But I am not a nurse, which was really clear tonight.  I wanted to do the shot.  It is very important to me that both of us have to do it, so it's not just Jason having to be the "bad guy" every week.   But I totally failed. 

Phoebe was crying and Jason held her and I tried to stick her, but I didn't have enough force.  I knew the needle didn't go in far enough to inject the methotrexate, though it was enough to draw blood. So I stuck her again, but same problem.   Phoebe was screaming and I just couldn't do it again.  I gave Jason the syringe and picked her up and we restaged.  Jason had to readjust the shot, so I stepped outside on the porch with Phoebe for a second, which usually calms her and it did help.  I told her I was so sorry I couldn't do the shot right.  Then I took her back in and she immediately was crying again and I held her and Jason did the shot.  I couldn't look, I started to cry too, while Cordelia hovered around in the living room, no doubt horribly stressed out by this whole process.  I wish I could have held it together for her sake as much as Phoebe's, I feel like this just traumatized everyone.  I managed to tell her, "I'm just so sad we have to give Phoebe shots," but how hard must it be to see your mommy crying?  

We had our ice cream party, and I tried to get it together, but basically was choking back tears the rest of hour before bedtime.  Phoebe pointed at me several times and did her "Ahehehehe" fake-crying sound that she does whenever she sees Cordelia crying, her way of acknowledging she understands what is happening.  I went off to cry in the bedroom, but Phoebe, of course was following to find me within moments.  (Jason frequently calls her the "Mama-seeking Missile".)   She saw I was crying more and said "ahehehe" and then climbed up on the bed next to me and gave me the BIGGEST hug, putting both her arms around my neck and squeezing me really tight.  Like, an even better hug than she normally knows how to give.  How sad is it that my 1 year old, who got stuck 3 times tonight because of my inability to do the shot right, is the one who is comforting ME at the end of the night?  It's just terrible in every way.

Then, we had to do both kinds of eyedrops!  I'm sorry, Phoebe.  I'm so sorry.  She passed out instantly for once though, as lately she has been incredibly restless when falling asleep or having trouble going into a deep sleep.

Cordelia on the other hand was melting down over having to get ready for bed.  I know how badly she needs sleep, but tonight was so stressful, I let her have a bedtime re-do and go play for five more minutes so that she wouldn't go to sleep feeling miserable.  

I didn't even go into the other hard parts of the day.... The morning started with Cordelia falling apart as we tried to leave the house because she just wants to stay home and play legos.  For the first time since that missed Motrin experience, I forgot to give Phoebe her Naproxen this morning (though we did do eye drops!).  Thankfully, Phoebe was still able to walk and she had a dose of motrin when she got to Meme's house.

It was a rainy day at school, where I spent much of the time helping out in one of our more challenging classrooms... and I feel terrible because I see how much they are struggling and I don't know how to solve their problems.... 

Phoebe's nap schedule is all messed up because of stupid goddamn day light savings time, so she is only doing one nap, and much earlier in the day..... leaving her awake for like 6 hours until bedtime, which is really too exhausting for her.  She starts getting really tired after 4pm but that's too late for her to take a nap.  

Jason got home after 7 because he went to the pharmacy for us..... (Needed more eydrops.  And to refill Naproxen, which was formerly $289/30 day supply, but is now also $0, thanks insurance.)  

And to top it off, I've just read Stephen Hawkings died.  Well, that just blows.

Sigh.

I know how hard this is.  I know I am not a nurse, who gives shots to hundreds of people.  I'm just a mommy learning how to do it on her own baby.  Phoebe is the strongest, bravest person I know, I just have to try and be as strong and brave as her.  I haven't actually broken down too often through the last month (yes, it's only been a month today since the MRI!).... usually it's just driving alone in my car and a song will make me feel everything too much.    

Tomorrow Dr. B is squeezing us in, to evaluate Phoebe's hand.  We'll see what she recommends. 

Here are some photos from our outside play today as your consolation prize for another depressing post.  Good night.

She climbed to the top herself!  She still can't figure out how to slide down though.  

Right Hand Flare Up

Sigh, still waiting for Phoebe to catch a break.  I've started playing around with how to make a Facebook group to invite people to get blog updates through there, but I kind of would like to have a more uplifting post to share.  

My homework for OT was to massage Phoebe's right hand, maybe with a little bit of lotion, to start getting her used to it being touched.  Then, we could move up to doing some finger bends, to help her mobility.  Well, a couple days ago, I started making an effort to do that, and was also trying to rub her hand lightly when I would read her a book.  In general, she does not like her hand/fingers touched at all, so you can only do it for a few seconds before she moves her hand.

Before Doctor B had located the arthritis in Phoebe's knuckles, I was completely unaware of it as a problem spot for her, other than that I was curious about how she didn't seem to have a dominant hand yet and would switch back and forth.  Well, this weekend, Phoebe's knuckles are having a flare up.  On Saturday, I could feel exactly what she was talking about with the arthritis.  There is a hardness to them and they were looking more swollen.  And there was a new issue.... on the back of her hand, opposite the palm, Phoebe now has a puffy, swollen welt.  Not red or irritated, no bug bite or pimple, but definitely swollen.

By Sunday, it still had not gone away, so I decided to get more information about this and reached out via the Facebook group.  I really can't imagine going through this whole diagnosis process without an instant support group at my fingertips.  It's so invaluable to me.  Anyway, I was kind of waffling on emailing my doctor or contacting the Rheumatologist On Call at the hospital, but the first commenter just encouraged me to call. 

I left a message with the operator and was called back within half an hour, as promised.  I spoke to a lovely doctor, who works with Dr. B and knew about Phoebe because she'd heard about the toddler patient getting hourly eye drops.  😩

I'd never called the On Call before!  I told her we were still new to this and just weren't sure what we were seeing.  She was so kind and helpful. 

She sent me a follow up message, summarizing our conversation, so I'll just use that here:

"....the new swelling likely reflects Phoebe's ongoing inflammation from her active arthritis -- sometimes this occurs as inflammatory cysts or nodules and isn't always limited to the joint space -- that'll take some time to calm down since she's only recently started the methotrexate. 

For now, just keep an eye on it and be reassured that Phoebe can still use her hands without issue. It's unlikely the swelling will rapidly progress, but if the swelling worsens to the point where it's painful at rest (or she flat out refuses to use that hand), the whole hand starts to appear taut/shiny, or it feels much cooler/turns dusky blue/purple (a sign of decreased blood flow), please take her to urgent care/ER."

I also messaged our doctor, I'll probably hear from her tomorrow.  I was also asking them both if Phoebe should go back to the OT sooner than the 19th, as her appointment is kinda far, but on call doctor in her  follow up message said she thought it wouldn't be helpful for this.  I guess my one worry is that since I was (lightly!) massaging her hand and then boom! a new hand symptom, I can't help but wonder if I could have actually caused things into getting more irritated? ***worries***

Anyway, so now we have a cyst of synovial fluid or maybe a nodule, but overall, the instructions were just to leave it alone and wait for the MTX to keep building up to hopefully work.  Injection Day Tuesday is just around the corner again.  

I really couldn't get a good picture of it, Phoebe kept moving around.  If her hand is more flat, you can definitely see the lump.

Over the weekend, Jason and I totally perfected team eye drop treatments. Yay!  I guess that is one benefit of having to do this for so long, we are getting to be pros and super fast.  Phoebe is even better with it, because it is over very quickly.  We are just so determined now.  We tell her every drop has to count!  No more exhaustedly "hoping some made it in", we are really pulling open the pocket of her eye (not easy to do!) and making sure it gets in there.  That is not fun, but we have to do it.  I'm not looking forward to having to go back to having to do it alone tomorrow afternoon.....  

Eye Doctor Again

Our eye doctor appointment was at 10:45, but we didn't get seen until close to noon.  They got backed up with something.  I hope normally appointments don't take so long there.  Someone did actually come out and apologize for the wait to me and another family, so at least they were conscious of it.

Phoebe really enjoyed the waiting room.  It has a train table, puzzles, some trucks.  She was in a really good mood and we had fun playing.

 She was also extremely hungry and ate almost her entire lunch!  I noticed later they had a sign by the counter to not have food or drinks in the waiting room.  Oops!  Fortunately we didn't make a mess.


Finally we got to see Dr. C.  Phoebe was very good about sitting in the chair and put her chin in the apparatus..... I don't know what to call it.  I kind of had to hold her head to press her forehead into it more, so she didn't like that part and wanted to take her head out pretty quickly. We tried counting and then singing to her to get her to hold still longer.  Dr. C said she still had quite a bit of inflammation and that she could see "cells" floating around in her eyes, I think in the "anterior".   I didn't know exactly what that meant.  She said that there are white blood cells in her eyes that shouldn't be there, they should be in her blood!  I guess that is part of what happens during uveitis.

I asked how in danger Phoebe was of going blind.  She said very low!  I said, but her uveitis seems so severe.  She said, yes, it is very severe, but she would not start to lose her vision unless it went untreated, like another year or so.  We are treating it, so it is going to be taken care of.

We have to continue to do the hourly steroid drops for another two weeks.  She also said to do the dilating drops cylogyl at night, to let her eyes rest with it, to help make her iris less sticky to absorb the medicine.

I know a concern before was not wanting to do "too much steroids", but Dr. C said another two weeks of hourly steroids was still not approaching the "too much" level.

Next, she wanted to test the pressure in Phoebe's eyes.  She said that we should just try it and see how far we could get before Phoebe would protest too much-- she didn't want to make Phoebe hate her when they were getting on well.

How to test the pressure in eyes:

First, Phoebe was given some drops that sting, but would make her eyes numb.

Then I had to try and hold Phoebe still so the doctor could tap on her eyeball with a tool that would measure the pressure.

As you can imagine, Phoebe did not like any of this.  Hell, I would not like it if someone tapped on my eyeball!!  Ug!

Anyway, so I got to hold Phoebe and try and keep her flailing arms and kicking legs still, while she also tried to turn her head away and close her eyes.  The doctor was able to get one tap on each eye.  She said that ordinarily she would get several taps to get a better reading, but that was all she was going to be able to get.  Actually, she did one eye twice because Phoebe was clenching and squinting so much that the reading was way off, like in the 90s.  In the end, the numbers were something like 15 and 19.  I have no idea what that means, but I guess it was not in a very abnormal range?  I have no idea, but it wasn't fun for any of us.

Fortunately, Phoebe recovered quickly once it was over.

It was already like 12:30 and I had to be back at school to pick up Cordelia at 1pm.  I also had to call Walgreens because I was basically all out of the steroid drops.  I guess a small part of me had been holding out on refilling it because maybe Dr. C would say that we were done.  But I knew that was unlikely.  I knew she would say to keep doing the drops.  But still, after the appointment, I was just so tired.  And just so sorry for Phoebe that we have to keep doing this, and all these other things, to her, all the time.  It's just a lot.

Cordelia started to have a meltdown in Walgreens because she wanted to sit in the umbrella stroller. I will not lie, I told her to hold it together and be quiet and we could go in the toy aisle and pick a toy after.  I just could not deal with a meltdown.  She still gave me her glare and didn't want to stand next me, but at least she didn't fall apart crying and yelling.  She probably didn't deserve a toy because she still gave me so much attitude, but Phoebe sure did, so yes, Cordelia left with a PJ Mask look and find book and Phoebe picked a mini Mickey Mouse microphone that plays songs.  We made it out of the store, which was all I could handle.  😓

In insurance news, we have hit Phoebe's deductible, which was covered by Jason's HSA.  Now we will have to start paying around 20% of expenses, up to the individual out-of-pocket-maximum.  A friend has also referred me to some services, but I still need to look into and apply for things like that.  But in good news, Phoebe's eye drops were suddenly $0.  Before that they were going to be $175, but then, as you may recall, the pharmacist gave us a discount card from the company and suddenly they were $25.   I'm glad the insurance is covering them now, because I think that discount was only good for 6 prescriptions, and we went through 3 refills to get through our 2 weeks.

Tuesday's Shot and Wednesday's PT

I guess I should start having more descriptive titles for my posts.

On Tuesday we gave Phoebe her second shot of methotrexate, her first shot at home.

Jason thankfully was able to leave work a little early, to come home and have a bit more of an evening with us.  I just hated the idea of having to stick her and then send her straight to bed.

Right before the shot, the person I was actually consoling more was Cordelia, who said that this was the worst day of her life!  Awwww, poor baby.  Cordelia hates shots--- the last time she had one, she wanted to hide and I had to drag her out and hold her down while the nurse did it.  Pretty much the opposite of how I would like her shot experiences to go, because I feel like that's just setting you up for more trauma the next time, but, sorry kid, that's how it went down.  Anyway, I asked Cordelia if she wanted to stay in the living room with us nearby or go in her room, and she decided to stay near by.  She didn't have a melt down or anything, but I'm sure it was stressful.

I have talked to Phoebe about how she got a shot before and that it was a little poke and that it was medicine to make her be healthy.  But in the moment, I didn't give her enough credit to understand what preparations were going on around her, because she definitely figured it all out.  She heard me talking to Cordelia first about how we were going to do the shot and then she saw Jason prepping the syringe and immediately started crying.  So I had to switch from talking to Cordelia to going to Phoebe, not as smoothly as I would have liked, for her own comfort's sake.  So I picked up Phoebe and asked Jason to do the injection instead, because if I tried to switch to him holding her at this stage, she would have just gotten more hysterical.  He was fine with that, and now we can both say that we've done it!  So I held her still, but she was pretty tense.  Jason usually gets a better grip on her  We tried this buzzy bee product, but her leg is so small, there's not much room to strap it on her thigh and have lots of space to do the injection.  I don't think we got the best fit for it, we'll have to try again.

This bee vibrates and it's supposed to be a distraction and confuse your sensations to minimize pain during injections.  Thanks to my mom for sending it to me, as we have lots of shots in our future. 

Here is a link if anyone needs it, or just google Buzzy Bee Injections and it should come up: 

Buzzy Bee from Amazon

Anyway, with Phoebe getting upset, we kind of rushed just to get through it without dragging it out.  After, we realized we'd forgotten to do the alcohol wipe before hand.  It was still sitting next to us, unopened.  Oops.  We are still getting the hang of this, and trying to have everything organized before having Phoebe realize what is about to happen is going to be key.  She definitely wised up faster than I was expecting.

I think it's going to be hard for me to find the balance between telling her what's happening and just holding her down and surprising her with the shot.  We are going to be doing this weekly, it's so important to me to be honest with her, if I'm going to torture my baby.  :(

After we all told Phoebe how brave she was and gave her stickers and toys.  We all had ice cream for dessert.

Some people online have said that they are told to skip the folic acid on the day the methotrexate is given.  My rheumatologist said that was not how she was trained, but it was fine if I wanted to try that.... I'm not sure what exactly is the theory behind this, nor have I seen any compelling literature on it, other than maybe it interferes with the absorption?  Or that, as methotrexate strips the body of folic acid (hence needing to supplement), taking it on the injection day might just be pointless?? Anyway, I'm not sure, so I am just going to err on my doctor's side and give it to her daily.  Cordelia seems very fascinated about how we have to crush up the pills.  She has been telling people about it as one of the main features of describing how Phoebe has arthritis.

On Wednesday, Phoebe was not feeling super great.  She was stiffer and also wobbling more in her walking, having more times when her leg gave out and she would plop on the ground.  Maybe the shot was making her more off.  I'm guessing last week was still more of a great day from the steroid injections, rather than the mtx.  From what I've read since, mtx takes a couple weeks to build up in your system to do anything (usually at least 4 doses).

  Fortunately, Phoebe took a nap before I took her to PT so she did have energy to play.

I liked the Physical therapist, Laurel, though the OT Lisa maybe had a better immediate connection with Phoebe.

  Phoebe went to the swing right away. To my surprise though, it was a different swing.  This one was a rectangle.  You can see the square swing in the background.  It's cool that they can switch it out.

Wheee!

  In the video, you can hear me talking about the train roller coaster.  Phoebe went to check it out later, but the train moved before she got onto it, and it scared her.  Then she wouldn't get on it!  Awww, I was disappointed.  I wanted to see her do it again, she had loved it on Monday!  Maybe climbing up would be more daunting since she wasn't feeling as super great.  I hope she will wantto try it again soon!

One thing that is good for Phoebe to practice is mastering stairs, stepping up and down.  The gym mats were really good for this.  Laurel said to fold some towels up and have her walk on them at home.

She then played a game with Phoebe to get her to reach up high on tip toes and also squat to pick things up.  She had a little magnetic bus puzzle.  You put alphabet letters into a spot at the top and it would read each letter and sing.  It was kind of too hard for Phoebe to put the letter puzzle pieces in, but that wasn't really the point of the activity.  It was just to get her moving, but still, it wasn't as fun because she couldn't do the whole task on her own.  But the thing played the "Wheels on the Bus" if you pressed a music note button, which is our girl's fav song.  She loved that part.  I liked how Laurel scooted the puzzle higher just a little bit each time until Phoebe was on tip toes.

Then she put it on the floor, along with it's box, and spread out all the puzzle pieces.  Phoebe had to reach to her side, gathering up letters and either trying to put them in the bus or just dropping them in the box.

I let Phoebe venture out and play while I sat away from her.  She did fine, but I wonder if this may also have contributed to why she wasn't quite as joyful during the game.

Phoebe then got interested in a dart board on the wall.  It had magnetic darts.  We did a similar game of making Phoebe go up on tip toes to get them down.  She could just barely reach, I think Laurel may have actually been holding it at the right height for her.  Then we put it on the floor and tried to get Phoebe to stick them on.  She kept pressing the nonmagnet side down though.  Phoebe also thought the darts were candles, and adorably kept blowing them out.  She also said they were "hot."

Laurel said it was good to do both time in shoes (cushiony) and bare feet for Phoebe, which we already do.  She didn't think she needed any JA orthodic inserts or anything.  She was not concerned over Phoebe clenching her toes for stability when she walks, though I think it looks uncomfortable!

I asked Laurel how often she saw cases of JIA and she said she did see it often.  I asked about toddlers and she said not as often as she had in the past, but that one of her other new clients was also sent to her from Dr. B and was also a toddler.  We went over my concern of how long the steroid shots would last, she said some people get them every three months.  Oh man, I cannot imagine that.  But she said at least now we know the steroids worked for her; some people they don't have an effect on.

We go back on the 16th, but we will see the other PT from the team, Tiffany, who we have yet to meet.



In other news, I feel I must record the continued outpourings of kindness we are experiencing from the families at school.

One family gave me a very thoughtful card and a gift certificate for a meal program.

And someone gave me an anonymous donation of $200.  oh my goodness!  My director gave it to me and said the mom didn't want me to know who it was from, just to have it.  Honestly, I don't even know what to say!   I'm just overwhelmed!   Parents at school don't have this blog, but if the person should ever read this, I'm beyond grateful.  I hope that when someone else is in need I can pay it forward with such kindness and generosity.



Tomorrow we go back to see the ophthalmologist, Dr. C.  If she even tells us we can give Phoebe eye drops every TWO hours, instead of hourly, I will be happy.  But I'm also mentally preparing for just "keep doing what you're doing".

Fun First Occupational Therapy Apt

Today was the best doctor's appointment by far!!

I took Cordelia to school and then stayed in my classroom for an hour and a half.... then it was time to head back out to pick up Phoebe!  The back and forth.... along with missing time off work, you also have to consider all the extra travel time/gas expenses when you are treating your child.....

We went to a new medical building, but fortunately still in a neighborhood close to home.

I filled out the paperwork, listing Phoebe's various conditions and the ever lengthening list of medications she is now taking.  Ug, I remember how whenever I filled out one of those forms before, I could just circle "No" all the way down the line.

We met the incredibly nice OT, Lisa.  She was just lovely, so calm and sweet and Phoebe liked her right away.  Best of all, the office had a Sesame Street decor theme, which was perfect because now that I'm starting to allow Phoebe some screen time at home so we can all just veg out-- Sesame Street is my go-to show for her.  She was super excited to see a big mural of all the characters in the hallway.  Inside the play space, there was a frame picture of them that she kept pointing to!

We started by letting Phoebe play on a mat, while I gave Lisa the whole backstory and went over everything she has gone through.  So much for such a little person!  She was very empathetic, and of course, like everyone, was shocked when I described the hourly eyedrops.   I got to tell her about how Phoebe had regressed in her walking.... never crawled anywhere, cried when she took a step, had to hold on to things to support herself--- if she could even put weight on her feet, or how she couldn't even bend to pick up a toy.  Now she is doing ALL of those things.  My concern is that the joint injections are going to wear off, but hopefully these therapies are going to help prevent that.  She is so much improved, but it's still clear to me that things are not perfect.

 Phoebe got to play and explore!  So many fun things to do!

So many different types of balls to play with!  Phoebe wanted to carry some down a long, long hall to the side of the play space, to drop them in a hoop.  She even let Lisa pick her up, showing how trusting she was.  I'm sure that hall way must be great for assessing children struggling to take steps, much the same as I've been using our hall way at home.  As Phoebe walked around, I pointed out how Phoebe has been clenching her toes while she walks, but that the rheumatologists hadn't thought it looked inflamed.  She agreed with me, but it's more likely that she is compensating using her feet.

Putting more balls in a bucket!

 Phoebe LOVED the swing!  I don't even have video of when she started to gently spin Phoebe around!  Wheeeeeee!

Phoebe saw the little roller coaster by Step 2 and wanted to get on it.  I don't have a picture, but this is what it looked like, the Thomas the Train version.

Phoebe climbed up the steps and managed to get both her legs over the sides and seated herself on the train!  Then she had to bend her knees quite a bit to put them up on the foot rest position.  It was a little difficult for her.  Lisa didn't want her to go too fast, so she helped move her down the track to the end, and then Phoebe scooted across the floor.  Wheeeee!  When the train stopped Phoebe said "Bee-yah!" her word for more/again!!  She loved it!  We let her do it a couple more times, but didn't want her to over exert herself (and she was getting pretty sleepy), so we put it away.  She can do it again on Wednesday for her PT!  

Lisa wanted to examine her elbow, so we started a new game over on the mat.  Lisa began sticking these suction cup toys up on the big mirror, to test Phoebe's range of motion in her arms and shoulders.  By placing them up high, Phoebe had to stretch and reach to get at them.  This was super fun.  We have these at school, but I had never thought to use them on a vertical surface.  Usually we just put them out on a table and let kids build with them.

While Phoebe was playing, she examined her elbow and thought it looked good. She also looked at Phoebe's fingers.  That was the one time Phoebe did show some slight discomfort.  She gave Lisa the "don't do that" for her right hand, but not her left hand, when she was showing me how to bend her fingers to help them with their motion.

Overall, Lisa was very happy with Phoebe's mobility.  She decided that pretty much my only "homework" is to give Phoebe hand massage, maybe with some lotion, to try and do the finger bends some.  But to start slow, making it a little ritual, to build the habit and let her get used to it.  We don't have to go back for 2 weeks.  I was able to get an afternoon appointment, 2:45, so I won't have to miss work, but we will be having a struggle around nap time, if Phoebe keeps skipping her morning nap. I also asked, it sounds like siblings can come and play too.  So if Cordelia behaves herself, I hope this can be a fun way she can feel a little "involved" in some of Phoebe's appointments that don't involve shots or xrays!

So looking forward to her PT appointment on Wednesday!  We already met the physical therapist we will see then.  She came through and went into a little office within the play room and turned on the lights within.  Phoebe was fascinated by where she went.  She said "Off" as she noticed the lights go on and said "BYE!" several times after the woman had disappeared from sight!


Anyway, today was so fun, I just couldn't wait to write about it during Phoebe's nap!  :)

March 2

Phoebe has continued to feel pretty good, but I do see some stiffness to her.  The last two days she hasn't been bouncing off the walls with energy, like Wednesday was.  It is still difficult to get Phoebe to lie down and take a nap though.  Maybe the changes in the weather.  Also, teething.

She is eating a decent amount, but still expressing preferences.  Tonight she at zucchini and meatball but not spaghetti, which she has loved in the past.

Phoebe is very fed up with eye drops.

Upcoming Appointments:

Monday: OT at 11 am
Wednesday: PT at 11:30 am
Friday: Eye doctor at 10:30

So I will be going to taking Cordelia to my preschool, stay around in the classroom for a couple of hours and then leave again!  Not gonna be the greatest financial plan, but what can you do?  These earlier appointments will probably be better with how late Pheobe has been napping.

In other news, here is some fun times with the rain!

We also had a ton of fun dancing around to Taylor Swift songs and wrestling, with the most wonderful toddler giggles.  I wish I could just bottle those up forever.